EVENT: NYC Half 2014
EVENT DATE: Mar 16, 2014
More funds = More research + More awareness.
I'm trying to do my part in raising awareness and donations for research.
PKU is a genetic disorder in which the body is unable to breakdown the amino acid Phenylalanine. If it is not caught on Newborn Screening, the child will develop permanent intellectual disabilities, seizure disorders and psychological problems. Phenylalanine is found in all food except water, oil and sugar. Even fruit and vegetables contain phe. In short, Jordan is only able to consume 3-4 grams of protein a day. (Approx 225mg/phe per day) He can't eat any animal products. No burgers. No chicken or fish. No beans or nuts. No eggs. Not even "regular" bread or pasta. It's quite the tough diet to live with. People with PKU drink a special formula at a prescribed amount daily to get their nutrients. Not all insurance covers food and formula. At $12 for a pound of pasta, I pray for a treatment before he ever has to carry the burden of paying for his food. And one day, I hope that he can go to a restaurant or party, and have the freedom of choosing his meal from a menu that everyone else is choosing from. Sounds easy enough. But it is all about the research. We can all play a part in the future of PKU. Just a few bucks is all it takes to help.